RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)

Launched by HOSPITAL UNIVERSITARI VALL D'HEBRON RESEARCH INSTITUTE · Jan 9, 2024

Keywords

ClinConnect Summary

The RADeep study is looking into Rare Anemia Disorders (RADs), which are a group of uncommon conditions where people experience anemia, a shortage of healthy red blood cells. These disorders, such as sickle cell disease and thalassemia, can be serious and require specialized care from expert teams. The study aims to gather important information about these conditions, including how common they are, how long people live with them, and the best ways to treat them. By doing this, researchers hope to improve care for those affected and address gaps in knowledge about RADs across Europe.

To participate in the RADeep study, individuals of any age, from newborns to 100 years old, who have been diagnosed with a RAD, can join. Participants must be able to provide written consent, which means they understand the study and agree to take part. It’s important to note that people who have mild forms of these disorders or are unwilling to give consent cannot participate. Those who join can expect to help researchers better understand RADs, which could lead to improved treatments and support for future patients.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Patients must meet all of the following criteria to be included in the RADeep Registry
• • Age from 0-100, both female and male
• • Diagnosed as RADs (SCD, THAL, PKD, and other RADs THAL according to ORPHANET classification)
• • Able and willing to provide written informed consent (patient or legal representative for minors)
• Exclusion Criteria:
• • Patient or legal representative for minors unwilling or unable to give consent
• • Patients diagnosed with SCD or THAL (alpha-thalassaemia and beta-thalassaemia) traits or trait conditions for other recessive RADs